Frustrated ....

[mrsnights]

Hi. My name is Angel and I am new to the forum and in a nutshell my husband was diagnosed with kidney failure about a year ago. We are going through the VA for treatment. For this year the severity of the situation was always at the back of our minds and although we followed the rules the doctor gave us it didn't change us too much. His levels were holding steady up until a couple wks ago and then they nose dived to 15. Now they are in consultation to have the shunt put into his arm. Reality time ...

I am so confused by all of this and unfortunately no one seems to one to answer my questions. I am hoping that someone on here will know and can explain to me a few things.

They said his eGFR is 15 ... what exactly is his kidney function? Does that mean his kidney function itself is only 15% or is that something else entirely.

His diet confuses me ... they wont pin down exactly what he is supposed to have and not have ... so we've been going off of the basic kidney failure diet chart and monitoring his salt, potassium, protein, and phosphorous levels. The only concrete answer I did get from his doctor is except for strictly forbidden things ... everything else can be ate within moderation.

Medically and financially ... I dont know what steps to follow to get/receive help. He is still currently working ... but that could drastically change at any point and even though combined we are bringing in $2500 a month our financial outage is more per month than what we bring in due to travel expenses to doctor appts (kidney doc 3 hrs there, 3 hrs back - reg doc 1 hr there 1 hr back) ... we have 2 young children so there is always daycare fees for these days too. We've made cutbacks on bills just shy of having nothing other than elec, water, rent and gas. With this I know there is no direct answer, just frustration that I feel most people that are not in this type of situation just do not understand. Just any ideas or suggestions would be greatly appreciated.

I am sorry ... today has just been a bad day for me and I just feel like Im lost....

[patty0805]

Re: Frustrated ....

first of all, welcome Mrsnights! your husband is a very lucky guy to have you around, you sound like a very concerned spouse. financial questions should be directed to your Davita social worker, they're pretty much up to date on what the kidney foundation will and won't help out with.
a GFR of 15 means dialysis isn't far away, my neph started me on PD when my GFR dropped to 14. your husband can still work after starting dialysis but from what I hear, it isn't easy. I chose to give up work, social security disability pays ok, not much left over though.
it's good that he is following the kidney friendly diet, just get a copy of his lab reports every month and make adjustments to the diet from that. I never used to be a label reader but sure am now.
best of luck to you both on this new journey. keep in touch and if you have time, go thru the kidney school modules, www.kidneyschool.org you will learn alot there.

[I Am Blessed]

Re: Frustrated ....

Patty, answer me this question---I've asked it before but no one answers me. Maybe you will? When your GFR went down to 14 and the doctor put you on PD, were you experiencing fatigue and other symptoms to cause you to be put on dialysis?

Thanks,
IAB

[patty0805]

Re: Frustrated ....

Dear IAB, first of all, LOVE the picture! 2 funny . I worked right up to the day before my PD cath surgery and to tell you the truth, it was all I could do to drag myself in to work that last 2 months. I was exhausted, everybody said I looked grey. I had that awful tin taste in my mouth and nothing tasted good. It was a very low point in my life. but after probably 1 week of dialysis I was feeling lots better. my PD cath was sore for awhile (I think my body was trying to get rid of it) but my life improved much more than I expected. you never really know how sick you are till you start feeling better.

[mrsnights]

Re: Frustrated ....

wow just reading those posts clarified a few things ... my husband has been extremely sleepy no matter how much sleep he gets and he looks pale to me ... and yes sometimes with a grey tint. Patty thank you for the welcome and regarding the levels he has been told that they are in consult to have the shunt placed into his arm within the next month. His levels dropped so fast this past time that I asked the question on what if the shunt doesn't heal before dialysis is needed and she (his doctor) told me that that is when they would have to have the line in his neck (she is hoping to avoid this) ... thankfully financial/medically the VA is covering his medical expenses for his doctors and such, we are just having to pay out to travel and co-pay on meds. We have in for VA Disability - where he will receive a monthly check but they have until late October to give us an answer ... so we just wait in that retrospect. The past 2 days have been a big eye opener for me and I was extremely down. Thankfully today I got a few good leads and some possible help with brightened my outlook completely.

[ICARTAKER]

Re: Frustrated ....

Hi mrsnights, I am new to the forum as well. There is so much information that I have learned from this website. My mom had been fighting dialysis for several months, finally a month to two months ago we noticed how sleepy she was all the time and could barely walk 10 steps and seemed confused, finally we had to rush her to the hospital and she had to have emergency dialysis. Right now she has a catheter on her chest and has been doing great, she is now able to walk again without being out of breath and her color looks back to normal. This week she goes in to get her access moved to her arm, she is very nervous as we all are for this next step. The posts have sure helped me understand what to expect from dialysis. The people at the Davita center have been wonderful and has made the process a little less scary.

[mrsnights]

Re: Frustrated ....

hi ICARTAKER =)

I am glad that after that scary trip to the ER your mom is feeling some better. I am hoping that the transition to the shunt being in the arm goes smoothly for her. My husband and I go on the 1st to see his nephrologist again and to see if she's gotten word back on when he will be having his shunt placed. She said the day surgury should be within the next month and I am just praying that his levels hold up to where they do not have to do emergency dialysis. He is experiencing being extremly tired, no matter the amount of sleep he gets. He has been getting out of breath but its not a constant thing yet - as with being pale. He has been getting dizzy but his doctor said that that was a symptom of the medication that she had him on.

I stumbled onto the DaVita forums quite by accident. I was looking for a chat room or forum site to talk with others that are in the situation that my family is in and I am thankful that this is one of the very first links I clicked on. From what people have been saying to me I am guessing that there is more to DaVita than just this forum site?!?!?

[concerned wife]

Re: Frustrated ....

Hi Mrsnights,

My husband found out 4 years ago that his kidneys had only 8% kidney function left and was immediately fitted with a catherizer in his neck so he could begin dialysis. Fortunately he was a good candidate for PD and has used this method for the last 4 years. He has been feeling lousy, tired, pale, greyish complection for about 6 months and one of his kidney doctors informed him two weeks ago that he must start hospital dialysis again. Scary as it was the improvment in his health in only two weeks lets us know they were right. He will have to have a shunt put in his arm very soon and I know the thought of that worries him. He retired a year ago so at least he doesn't have to go to work everyday. This is a great forum to learn about kidney disease and how to deal with it. I hope everything works. Keep us posted.

Deborah

[patty0805]

Re: Frustrated ....

Hi Deborah, I'm curious as to why PD didn't work for him anymore. did the dr say ?

[concerned wife]

Re: Frustrated ....

Hi Pattyo895

They never really explained why it quit working. He was still draining and taking in the fluid quite well, but he started losing his appetite, he was tired all the time (again) peeing very little, grey completion. I was starting to worry I was going to lose him while at the same time reassuring him that he would be fine. Even his nurses are surprised at the difference in him so quickly. I'm just happy to have the old John back.

Deborah

[jodyt]

Re: Frustrated ....

sometimes the ports are not working? Also-Mrsnights-medicare is for all ESRD pts. you can apply at social security office-also apply for SSDI benefits when he can't work

[mrsnights]

Re: Frustrated ....

Jody ... I contacted the Diability office yesterday and was basically given the same information but with a few twists ... I was told that our household income could not exceed $150 per month to be able to Qualify ... so we are apparently going to have to keep sticking with the VA regarding all of his medical care. I specifically asked the girl on the phone if that was just HIS income our both of ours combined and she said the TOTAL household income which means him and I both.

I am starting to believe that I shouldn't stop there and continue to contact other places in the case that I got incorrect information. So I am asking this on here for anyone from the state of Texas that might know. Who do we contact and how do we go about this?!?!?! The VA seems to be dragging their feet, his eGFR dropped to 15 and he is starting to retain fluid. I am worried with the VA putting off his appts that it will cause him even more damage than he already has if not something worse.

His miltary VA Nephrologist hasn't even given us any documents stating that he is considered disabled. That is something I am contacting her regarding Monday since I was told that we pretty much cant get any assistance (outside of the VA) without it.

[mrsnights]

Re: Frustrated ....

quick question ... something that my husband brought up to me this morning. When you hit the stage in your treatment right before you start dialysis did anyone experience ringing in the ears ?

[carolinablue]

Re: Frustrated ....

I am on Disability SSI. I don't think you got the right answer from the person at SSI.
I am on DSSI for another reason. There are reputable lawyers that will handle your case for a fee if you win your case for disability, if you lose you pay nothing. Obviously your husband should qualify, and it has nothing to do with income or age. Please pursue it further. I assure you it will be worth it. Your husband would get his full SSI payment regardless of age, if he also worked outside of the military and had enough SSI money paid in.

[carolinablue]

Re: Frustrated ....

I notice he is still working. So DSSI is for people who don't work. I needed to add this to my last post.

Best of luck.